9th European Patients Rights Day

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Hosted By MEP David Borrelli, Co-Chair EFDD Group & MEP Gianni Pittella, Chair S&D

1 CTIVE CITIZENSHIP NETWORK The challenges of chronic diseases and patients rights in the framework of EU healthcare sustainability 9th European Patients Rights Day Hosted By MEP David Borrelli, Co-Chair EFDD Group & MEP Gianni Pittella, Chair S&D Group Room A1E2, European Parliament, Altiero Spinelli Palace (Place du Luxembourg), 1047

PROGRAMME 08:30 09:00 Arrival, Registration and Welcome Coffee Please allow time (up to ½ hour) for security check and registration before the meeting starts Chair: Hans Martens, European Policy

15 9:50 Opening Remarks and keynote Presentations Mariano Votta, Director of Greetings of MEPs who support the European Patients Rights Day: MEP David Borrelli, Co-Chair of the Europe of Freedom and

Health of DG Sante Mary Harney, Chair of the ESG and former Health Minister and Deputy Prime Minister of Ireland and Chair of the European Steering Group on Sustainable Healthcare 10:10 11:00 The

3 PROGRAMME 08:30 09:00 Arrival, Registration and Welcome Coffee Please allow time (up to ½ hour) for security check and registration before the meeting starts Chair: Hans Martens, European Policy Centre :50 Opening Remarks and keynote Presentations Mariano Votta, Director of Greetings of MEPs who support the European Patients Rights Day: MEP David Borrelli, Co-Chair of the Europe of Freedom and Direct Democracy Group MEP Gianni Pittella, Chair of the Group of the Progressive Alliance of Socialists and Democrats 9:50 10:10 Overview Martin Seychell, Deputy Director General for Consumers and Health of DG Sante Mary Harney, Chair of the ESG and former Health Minister and Deputy Prime Minister of Ireland and Chair of the European Steering Group on Sustainable Healthcare 10:10 11:00 The role of different actors in sustainable healthcare systems Maria Iglesia Gomez, Head of Unit D2 Healthcare Systems DG Sante, European Commission MEP Piernicola Pedicini, ENVI Committee member Roser Vallès Navarro, Director General of Planning and Health Regulation, Ministry of Health, Government of Catalonia Paolo Giordano, Secretary General European Union of Private Hospitals Peter Wiessner, Board member of the European Public Health Alliance (EPHA) and policy Co-Chair of the European AIDS Treatment Group (EATG) 11:00 11:15 Questions and answers 11:15 12:40 The role of prevention and innovation in sustainable healthcare systems Maria Teresa Bressi, Italian Coalition of Associations for Patients suffering Chronic Diseases, Celia Marín, Europso Executive Board Member of The European Federation for Psoriasis and Psoriatic Arthritis Associations Vincenzo Costigliola, President of the European Medical Association Tom Kelley, European Director International Consortium for Health Outcomes Measurement (ICHOM) Carina Schey, Health Economist, University of Groningen Elizabeth Kuiper, Director of European Affairs, European Federation of Pharmaceutical Industry Nicola Bedlington, Executive Director of European Patient Forum 12:40 13:00 Questions and answers 13:00 13:30 Conclusions Cinzia Pagni, Vice President of the CIA Antonio Gaudioso, Secretary General of Cittadinanzattiva 13:30 Lunch buffet

Nicola Bedlington - European Patients Forum - Executive Director British, she studied business and human resource management in the UK and France.

to this she worked as an external expert for the European Commission, heading the NGO unit within the HELIOS Programme, a EC Action Programme promoting equal opportunities for disabled people

In this capacity, she is the Co-ordinator of the European Patient Academy on Therapeutic Innovation ( EUPATI).

Entrepreneur in the catering sector, Piola Restaurant Miami Beach and Piola Restaurant Buenos Aires (1989-2003). Computer Technician (2003-2009).

Politics: Councillor in Treviso (2008-2013), candidate for President of the Veneto region (2010), Member of the European Parliament Co-Chair of the EFDD Group (2014- ).

4 Nicola Bedlington - European Patients Forum - Executive Director British, she studied business and human resource management in the UK and France. Nicola was the founding Director of the European Disability Forum, an umbrella organisation that advocates for the human rights and inclusion of disabled citizens in Europe (1996 to 1999),and prior to this she worked as an external expert for the European Commission, heading the NGO unit within the HELIOS Programme, a EC Action Programme promoting equal opportunities for disabled people ( ).From 2004 to 2006, she worked for the Swiss Government. She joined the European Patients Forum as its first Executive Director in June In this capacity, she is the Co-ordinator of the European Patient Academy on Therapeutic Innovation ( EUPATI). David Borrelli - MEP - Europe of Freedom and Direct Democracy Group (EFDD) - Co-Chair Born on 28 April 1971 in Treviso, Italy. Entrepreneur in the catering sector, Piola Restaurant Miami Beach and Piola Restaurant Buenos Aires ( ). Computer Technician ( ). Entrepreneur in the IT sector Trevigroup Srl ( ). Politics: Councillor in Treviso ( ), candidate for President of the Veneto region (2010), Member of the European Parliament Co-Chair of the EFDD Group (2014- ). Maria Teresa Bressi - National Coordination of Associations of the Chronically Ill - Project Manager Graduated in Communications with a focus on Institutions and Businesses. She also has a Master degree in Management of Health Institutions. From 2007 she started working with Cittadinanzattiva, dealing with the protection of citizens and patients rights and from 2010 she became the Project Manager for the National Coordination of Associations of the Chronically Ill (CnAMC). Vincenzo Costigliola - E.M.A. (European Medical Association) - President Graduated in Medicine from the University of Naples in 1972 and in Anaesthesiology and Intensive Care from the University of Pisa in He also attended post-graduated studies in Rheumatology, Dermatology, Proctology, Oncology, Surgery, Drugs Abuse, Emergency Treatment, Disaster Action, Hospital Organization, Medical Teaching Methodology and Computer and Audio-Visual Training for the Medical Profession. His professional experience ranges from senior military positions as Chief of Medical Services in the Italian Navy for a number of years, responsibility of the outpatients clinic of the Shape Hospital in Belgium and family practice in Italy and Belgium. Antonio Gaudioso - Cittadinanzattiva - Secretary General Graduated in Political Science and International Relations from the University of Macerata. He is currently General Secretary of Cittadinanzattiva (Active Citizenship) an Italian civic organization that promotes civic participation and protects citizens rights. He started his collaboration with Cittadinanzattiva in In 2002 he contributed to the drafting of the European Charter of Patients Rights promoted by, the European program of Cittadinanzattiva. He is regularly invited to take the floor as speaker in national and international conferences and seminars on the themes of citizens rights, welfare systems and corporate social responsibility.

Paolo Giordano - European Union of Private Hospitals - Secretary General He has been the Secretary General of the UEHP (3500 hospitals in 19 EU Countries) since 2005.

Before joining UEHP Paolo headed the Brussels Representation of the Italian Hospitals at the Confindustria Delegation to the European Union.

Mary Harney - European Steering Group on Sustainable Healthcare- Chair Mary Harney is a former Government Minister (Department of Environment, Department of Enterprise and Employment, Department of

She retired from politics in 2011 and is now a director of a number of private companies and a business consultant.

Member of European Board of Vital Voices, is a board member of the Hospice Foundation of Ireland and is chair of Amber, a research centre in Trinity College Dublin.

5 Paolo Giordano - European Union of Private Hospitals - Secretary General He has been the Secretary General of the UEHP (3500 hospitals in 19 EU Countries) since Paolo is also a member of the Executive Committee of Health-first-europe an alliance of patients, academics and medical industries directly supported by several European Parliament Members. Before joining UEHP Paolo headed the Brussels Representation of the Italian Hospitals at the Confindustria Delegation to the European Union. Prior to that he has worked for consultancies specialized in EU funding. He also has work experience at the European Parliament and the European Commission. Mary Harney - European Steering Group on Sustainable Healthcare- Chair Mary Harney is a former Government Minister (Department of Environment, Department of Enterprise and Employment, Department of Health) and was the first woman Deputy Prime Minister and leader of a political party in Ireland. She retired from politics in 2011 and is now a director of a number of private companies and a business consultant. Chair of the steering group of a 22 country European Sustainable Healthcare project that recently produced a White Paper Roadmap to Sustainable Healthcare. Member of European Board of Vital Voices, is a board member of the Hospice Foundation of Ireland and is chair of Amber, a research centre in Trinity College Dublin. Maria Iglesia-Gomez - European Commission DG Sante Head of the Unit on Healthcare Systems Maria is leading the unit responsible of developing input in the EU Semester for the area of Health. Her unit is also developing methodologies on Health Systems performance Assessment, implementing the Directive on Cross-Border on Patient rights and implement Patient Safety and Quality of Care strategies at EU level. Previously she was Head of the Unit on Innovation for Health and Consumers, responsible to develop and run the Innovation Partnership on Active and Healthy Ageing. Since 1993 she works as an official in the European Commission in different positions. She holds a scientific background as Veterinary and she studied also Political Sciences. Thomas Kelley -International Consortium for Health Outcomes Measurement (ICHOM) Tom Kelley, MD, MBA holds a medical degree from Manchester University and an MBA from Oxford University. We must measure and report outcomes that matter to patients. This makes sure that the system goals are in line with what patients want. Everyone can then work towards achieving the greatest outcomes and we can learn from those with the best results. ICHOM is helping make this aim a reality. Elizabeth Kuiper - European Federation of Pharmaceutical Industries and Associations - Director Eu Affairs Responsible for a proactive strategy regarding the Brussels institutions. Anticipating on future Presidencies of the Council of Ministers. Working together closely with the other EFPIA directors active on the Brussels scene. Elizabeth previously worked as attaché at the Permanent Representation of the Netherlands to the EU in the field of health, pharmaceuticals and medical devices. Prior to this, she worked as political adviser to the Minister of Health, Welfare and Sports in the Dutch cabinet Balkenende-IV, delivering special advice and support on healthcare policy related subjects. This was subsequent to her job as staff member of the Dutch Society of Surgeons. Elizabeth studied at the University of Utrecht and holds an MA in Dutch language and literature

Celia Marín - The european umbrella organisation for psoriasis movements Europso - Executive Board Born in Murcia, Spain.

Since she was diagnosed with psoriasis and psoriatic arthritis in 1996 she is an active and activist patient in psoriasis organizations in Spain and member of the Europso Executive Board in the

Hans Martens - European Policy Centre Senior Advisor & chairman of health programme Born in Denmark, he studied Political Science at Aarhus University, specialising in EU affairs and in public

He joined the European Policy Centre, a leading Brussels think tank, as Chief Executive in 2002, and retired from that post in September 2013.

Hans has become involved in a number of activities that are dealing with the sustainability of Europe s health systems, in particular focussing on value of health and health outcomes.

6 Celia Marín - The european umbrella organisation for psoriasis movements Europso - Executive Board Born in Murcia, Spain. She works as New Technologies and Privacy Consultant and she is member of the National Association of Spanish Health Communicators (ANIS). Since she was diagnosed with psoriasis and psoriatic arthritis in 1996 she is an active and activist patient in psoriasis organizations in Spain and member of the Europso Executive Board in the european framework. She has developed projects for psoriasis patients, communication campaigns and representing psoriasis patient voice in national and international meetings. Hans Martens - European Policy Centre Senior Advisor & chairman of health programme Born in Denmark, he studied Political Science at Aarhus University, specialising in EU affairs and in public administration, and went on to become Associate Professor in international political and economic relations. He joined the European Policy Centre, a leading Brussels think tank, as Chief Executive in 2002, and retired from that post in September He is also a Senior Advisor to the Danish think tank Europa. Hans has become involved in a number of activities that are dealing with the sustainability of Europe s health systems, in particular focussing on value of health and health outcomes. He has close relations to international organisations working on these issues, including WHO and OECD besides the European institutions. Cinzia Pagni - Italian Farmers Confederation ( CIA ) - Deputy Chairman Born in Livorno on September 14, 1971, graduated in Economics at the University of Pisa. Agricultural entrepreneur, owner of a olive - wine - farm. He holds the position of Deputy Chairman of the Italian Farmers Confederation ( CIA ) and the National President of the Provincial CIA of Livorno. Piernicola Pedicini MEP - Europe of Freedom and Direct Democracy Group - Coordinator Born on 22 May 1969 in Benevento, Italy. Piernicola took a Degree on Physics in 1998 and a Medical Physics Specialisation in 2006 at the University Federico II of Naples and he worked as Medical Physicist at the Department of Radiation Oncology in Rionero in Vulture, Potenza, Italy, since 2008 as health Director until his recent election as Member of the European Parliament. He is involved in political activities with the Five Stars Movement since its foundation, with a specific eye on healthcare and environment issues, always defending patients rights.he is member of the ENVI (Environment, Public Health and Food Safety) committee of the European Parliament and coordinator for the EFDD political group. Gianni Pittella MEP - Progressive Alliance of Socialists and Democrats in the European Parliament - President Graduated in medicine and surgery at the University of Naples in Italy. He was elected Member of the European Parliament in 1999, 2004, 2009, In November 2006, he was elected unanimously President of the Italian Delegation in the PSE group as well as in Since 14 July 2009, he became First Vice- President of the European parliament, after having been re-elected for the third time with the Democratic Party in the Southern Italy electoral district. His responsibilities also included that of the Budget and Buildings Policies of the European Parliament. He is member of the Audit Panel as well as of the Euro-Latin American Parliamentary Assembly. He has been also in charge of following and support EMUNI University (Euro - Mediterranean University).

Carina Schey - University of Groningen - Health Economist Carina is a health economist and pharmacist with extensive experience within the pharmaceutical industry and clinical practice.

She is currently pursuing her PhD research in novel ways of assessing the value of orphan drugs. Carina sits on a Clinical Research Advisory Board for several charities.

He has held important positions on several government boards and commissions in Malta (Food Safety Commission and the Pesticides Board).

He has been responsible for the implementation of a number of EU directives in the areas of risk assessment, food safety, chemicals and cosmetic products legislation.

Roser Vallés Navarro - Planning and Health Regulation Office, Ministry of Health, Catalonia Director General Bachelor in Medicine and Surgery from the Universitat Autònoma de Barcelona (UAB ) with a

7 Carina Schey - University of Groningen - Health Economist Carina is a health economist and pharmacist with extensive experience within the pharmaceutical industry and clinical practice. Carina has a passion for all medical matters, and in particular, improving patient access to orphan drugs for rare diseases. She is currently pursuing her PhD research in novel ways of assessing the value of orphan drugs. Carina sits on a Clinical Research Advisory Board for several charities. Martin Seychell European Commission DG Sante - Deputy Director General for Consumers and Health Graduated in chemistry and pharmaceutical technology, he specialized in Chemical analysis. He has held important positions on several government boards and commissions in Malta (Food Safety Commission and the Pesticides Board). He occupied the post of Head of Directorate at the Malta Standards Authority ( ). He has been responsible for the implementation of a number of EU directives in the areas of risk assessment, food safety, chemicals and cosmetic products legislation. He held the post of Director of Environment in Malta ( ). He was appointed Deputy Director General for Health and Consumers at the European Commission in March Roser Vallés Navarro - Planning and Health Regulation Office, Ministry of Health, Catalonia Director General Bachelor in Medicine and Surgery from the Universitat Autònoma de Barcelona (UAB ) with a specialty in Family and Community Medicine and a Master in Health Institutions Management. She also holds a Diploma in Public Health Service from the Institute for Health Studies. She has worked as a family physician in a Primary Care centre (1993 and 2011). She was Councillor of Social Services, Health and Family and Third Deputy Mayor of Vilassar de Mar ( ). Mrs Vallés Navarro has leaded several programmes for prevention and health promotion like the Committee on Healthy Lifestyle in Vilassar de Mar. She has promoted the creation of the Catalonian Patient Advisory Council attached to the Ministry of Health, acting as a secretary and coordinator since Mariano Votta - - Director Graduated in Political Science at University of Rome, Italy. He has a Master in European Public Relations and a Master in Corporate Social Responsibility too. He is a programme manager and free lance journalist with more than 10 years working in the field of protection of citizens rights, stakeholder engagement, communication and civic information. In he worked as consultant for the United Nations Development Programme in Colombia, to assert a new governance in the managing of Public Services and Health. In June 2013 he was nominated Director of, the European interface of the Italian civic organization Cittadinanzattiva, responsible for European Policy and international relations. Peter Wiessner - European Public Health Alliance (EPHA) - Board member Graduated in Social Sciences at the Humboldt University, Berlin. Mr Wiessner works for more than 20 years for the HIV community, with the focus on access to human rights, prevention, treatment and care for marginalized groups, such as prisoners with HIV, undocumented migrants or gay men. He is Policy Co- Chair of the European AIDS Treatment Group (EATG).

8 HEADQUARTERS Via Cereate, Rome - Italy Tel. +39 (0) Fax +39 (0) mail@activecitizenship.net REPRESENTATIVE OFFICE TO THE EU Rue Philippe Le Bon, Brussels - Belgium brussels@activecitizenship.net

VADEMECUM OF THE SPEAKERS

VADEMECUM OF THE SPEAKERS Dansk Erhverv Confederation of Danish Enterprise Kasper Ernest Director, EU & International Department Member of the Management Board, responsible for European and International